Yesterday, at the start of week . . . uh, what week are we on . . . oh right, five, I read a four-paragraph story during my reading comprehension retraining with Lindamood-Bell Australia, but we didn’t finish the full Visualizing and Verbalizing process. Today we did.
After the clinician read a grade level seven Whole Paragraph, I began reading a four-paragraph story in hour one. I got to the end of the third paragraph when it was break time. I inhaled some sugary treat, and the clinician decided we would finish the four-paragraph story. Fine with me!
The sugar moved my by-then sluggish neurons to read the fourth paragraph then finish the whole process of first visualizing the story in blocks and then verbalizing the entirety of it, including giving the main idea and answering questions about the story.
All told, the four-paragraph story took me about one and one-quarter hours to get through.
Since we still had time left in hour two after completing the four-paragraph story, the clinician read a Whole Paragraph story, and I have a word summary of it. Then time was up, and I was outta there . . . well, logging out as quickly as I could move and click my mouse.
We began the first hour with me having to recall the four-paragraph story we read yesterday. I did okay, if you count remembering from the middle on then remembering bits and pieces of the first two paragraphs and recalling them out loud out of sequence, okay. I got the details right because I could see the pictures in my head. Visualizing really does facilitate recall! But since this is the first time my recall was out of sequence, clearly we’re starting to challenge my most injured neuronal networks and areas.
Like yesterday, I have a bit of a concentration headache, and my entire head feels wrapped in cotton wool. I’m dying for bedtime, but sleep isn’t guaranteed as sleepy and tired as I am. I have the feeling that this intensive cognitive work somehow revs up my brain so that it’s tired yet cannot sleep until enough time has passed for the neurons to return to their usual working level.
Working the neurons, changing pathways in the brain, fills every cell in my body with white noise. Fatigue while learning how to comprehend written text is spreading into the rest of my life.
“Where do you want to meet next time?”
“Uh . . .”
“What part of the city do you want to do next?”
“Uhhhh . . .”
“Why don’t we touch base closer to the time and discuss it then?”
“OK,” I agree, dying for a nap. Or coffee.
Normally, I know what streets, buildings, areas I need to do next in my work with my CNIB orientation mobility trainer. But with the Lindamood-Bell Visualizing and Verbalizing program sucking every oxygen and glucose molecule out of every brain cell, every muscle cell, I got nothing left to answer simple questions.
As always, I find it remarkable how much a sweet something — not tooth-sucking sickly sweet but flavourful with sugar — can revive me.
Why am I surprised?
The brain runs on glucose, one of the constituents of sugar. Glucose refuels the brain’s energy packs.
I’m almost halfway through restoring my reading by developing my ability to create imagery while reading.
Early this week, the sound of the plane rattling in the story I was reading popped into my mental imagery. When I told the Director of the Lindamood-Bell Australia Centre, he was very excited. Very. This was a sign of automaticity, he explained. Not only did it pop into my head without any conscious thought on my part, it was also a second sense to add to the visual sense that we began with.
They’re changing up the program again. At least this time, it’s a balance of easing off with keeping the accelerator on.
Each hour begins with me straining to recall what stories I read the day before (or occasionally at the start of the second hour, the hour before) and then giving a word summary based on my recalled pictures of that story. I can usually recall one story, but a second story for the second hour takes effort. Yesterday, total blank. But once my clinician prompted me with the words “alligator turtle,” the pictures of that story began to flow back into my consciousness and I was able to recall most of the details. Sweet!
After that, either I or they read a Whole Paragraph followed by one or two Paragraph by Paragraph, either two or three paragraphs long.
The change up is that the grade level of Whole Paragraph has been dropped back down from grade level 9/10 to level 5 to be on par or one level above Paragraph by Paragraph.
The idea is that through Whole Paragraph, I will learn how to create concept imagery of more and more complex, dense, and abstract language. And through Paragraph by Paragraph, I will learn how to create concept imagery for longer and longer passages of text and develop greater stamina during reading. They want to keep the former at a level or two higher than the latter. And they want to increase the levels of both in lockstep with each other. I guess they wanted to give me a bit of a break by starting a new book of stories using this approach at level 5.
So after stressing and dithering and talking and talking with my health care team, I’ve taken the plunge and will soon restart my efforts to take back my reading from my brain injury.I wrote previously about a recent comprehensive reading assessment with Lindamood-Bell, a US company devoted to training/restoring reading and math to students and adults, and I also wrote about my results. They confirmed my experience with trying to read long-form materials or even material as short as tweets when I’m tired. I was introduced to the concepts of dual coding theory and reading comprehension through concept imagery. And I learnt more and more about how they would restore my reading comprehension using their Visualizing and Verbalizing Program that they recommended. To be honest, I’m still absorbing it all. But I cannot wait to start. I need my reading back in time for NaNoWriMo; so in my usual brain-injured way, I’ll just roll with it while my brain learns, forgets, remembers some bits, processes, absorbs more info, struggles to integrate, comprehends a bit more, and finally catches up with my actions.After discussing it with my neurodoc*, I’ve decided to contract for 80 hours. It’s the minimum required. Even though 120 hours was Lindamood-Bell’s recommendation to regain my ability to read philosophy textbooks and comes with a 5% discount, I can’t afford it. Or rather the financial pressure of having a large upfront cost would stress out my brain so much, it would probably fight against the instruction. I can always extend it if I need more than 80 hours, but I’m hoping I won’t have to. (Heck, I can’t even afford 80 hours, don’t know where else I can get the money from once the line of credit runs out, tell myself that’s what credit cards are for, and my teeth grit at the thought of carrying a balance on them. But the soul cost of not pursuing this opportunity to get back a core part of who I am is worse than the financial cost, even though organizing it and managing preparation for starting Visualizing and Verbalizing has shot up my busy brain — ruminations that come with brain injury like a hamster shot full of steroids racing on his wheel.)I’m not going to rely just on hope though to make those 80 hours behave like 120. I’m going to use my audiovisual entrainment device to perk up my brain and enhance relaxed, focused attention so that I can respond as optimally as I can to the instruction. I’m also working with the ADD Centre to see if my brain biofeedback protocols can be tweaked to facilitate the neuronal regrowth we want. We’ll be keeping the gamma brainwave biofeedback for sure since it supports my whole brain and “grounds me.”My neurodoc and I had a brief, candid discussion about my coffee purchases. If I cut down on the treats, I can afford the increased cost of upgrading to faster broadband. My current basic broadband is too slow for online instruction with Lindamood-Bell, especially as I’ll be working with their Australia centre. Wow, geographic distance does make a diff. What was OK during assessment with their Minnesota centre was not so hot with the Australia centre with its many moments of video stuttering and audio distortions. But it did the job of discussing my options and getting all my questions answered at once instead of the painfully frustrating slowness via email, with the 14-hour time zone difference slowing it even further.With faster broadband comes another cost: a VDSL modem. Really, you think all you have to take into account is the hourly instruction rate; the next thing you know, all sorts of costs are raising their hands, going count me in, too! Maybe somehow I’ll pay it all off in a couple or four years. I’ve been down this road before. For the last couple of years, it’s been nice not carrying debt in order to pay for my medical expenses in universal-health-care Canada. But I guess that vacation is over. Sigh. By the way, others with brain injury who require medical care not covered by their provincial health care pay for it by credit card. Imagine being on ODSP, living in social housing, and having to pay hundreds of dollars or over a thousand per month for medical expenses‽ Naturally, credit cards get maxed out. Canada’s universal health care is pathetic and impoverishes desperate people even more than being unable to work does. But I digress. If all goes well, I’ll be starting July 8th. Yes, a Sunday. The only time I’m reliably available five days in a row for two hours per day is at night. Lindamood-Bell centres close at 5:00pm in the summer (North America), so that’s why I’m doing it with Australia (winter hours). Their office hours coincide with my night hours. Try to wrap your head around not only a different time but a different date! The contract shows me starting July 9th, their Monday, while for me it’s July 8th! Needless to say, our emails have been full of “your time” and “my time”s!Now that everything is almost in place to start — fingers crossed no more hiccups — I’m counting down the days. But I should probably rest — and rest some more while I can.
*My neurodoc and I have been working things out for about a month now since I fired him and then discovered my brain injury grief, including for losing my reading and the long soul-destroying struggle to get it back, was more than I could handle on my own. However, I wasn’t about to continue the way we had been with him pushing his wrong goals on to me. I figured out a paradigm shift to force him to pursue my goals and only my goals. Sometimes doctors don’t know best. Since he got the message, things have been slowly improving. It helps that we’re learning that he has to explain things better not just assume I’m following his miles-a-minute thinking. He’s also realizing that given my severe abandonment issues, he needs to be more obviously supportive. I’m crossing my fingers, but I think I can say we’ve turned the corner. Trying to find good, appropriate psychiatric or psychological care for managing brain injury life is not easy. Ontario doesn’t cover psychologists for people with brain injury. And too many psychiatrists, who are covered since they’re physicians, treat it with a medication-only approach. Wholly inappropriate and, I might say, injurious. So I appreciate mine learning to do better.
Several months ago, one of my brain injury tweeps told some of us how she’d gotten a weighted blanket for Christmas and was sleeping snug as a bug — at last. I hadn’t heard of a weighted blanket before. She explained how she’d heard of them through her work with children with autism, and I looked more into it. As I did, Ballast Blankets out of Alberta reached out to me on Twitter, I checked them out and liked their business culture, and I bought their teen size with the assurance of a 30-day money back guarantee.
My biggest concern was my thermoregulation issue: was I better enough to tolerate the heat from sleeping under a 7 kg blanket? Could I lift the weight regularly to wash and make the bed? I decided no and went with a lighter one.
Apparently, weighted blankets work similar to deep pressure touch and so create a sense of calm.
“While research on weighted blankets is sparse, deep pressure stimulation has been found to calm adults and children with anxiety, autism, and attention difficulties, researchers say.” WebMD, Seeking Better Sleep Under a Weighted Blanket
To do that, they must be 10 to 12 percent of your weight. Because of my shoulder and neck injuries from the car crashes years ago, I couldn’t imagine having to lift, adjust, sleep under a blanket weighing ten percent of my weight. The teen size is about 8 percent.
The weight is a personal preference. The blanket has an outer cover that you can remove easily and wash.
I ordered! Your shop was pretty easy to use, the biggest decision was trying to decide what size. 🙂 It didn't say the delivery time though. About how long before it's shipped and which shipping do you use?
I received it as the Olympics were beginning. Uh, bad timing, Shireen.
It’s very difficult to gauge the effectiveness of a new measure to improve sleep when you’re staying up until all hours and/or waking up super early to watch athletes compete on the other side of the planet!
The friendship with my new blanket was a bit fraught because of the Olympics and then the Paralympics and, as well, the usual adjustment period that Ballast Blankets referred to.
I had the blanket lengthwise at first and under my coverlet. But that was too heavy, and I snored! I don’t snore. Not good. I folded down the coverlet so it didn’t add to the blanket’s weight. The second problem was my feet hurt from feeling weighed down. Also, although they’re usually cold, they heat up during the night, and under a weighted blanket, they became red coals. I find it’s better to wear socks and have my feet only lightly covered, weighted blanket or no weighted blanket.
I turned back to the internet and read again others’ experiences. One person used the blanket horizontally to cover both herself and her husband. I decided to try that and stretched the weighted blanket horizontally across my bed, covering me from just under my neck to below my knees. I used my coverlet to cover my feet and just lap over the weighted blanket.
Once I recovered from the Olympics and Paralympics, the effect of the weighted blanket began to take hold. Some nights I got restless; trying to turn under the weight hurt too much. But over time, I got used to how to lift the weight and adjust my position. Restless nights have lessened overall though. I also am using my audiovisual entrainment SMR For Sleep session much much less as I’m not usually still awake at 1:00am . . . 2:00am . . . 3:00am. It’s true, my sleep had been improving. But it began to feel more solid, more like I was falling asleep quicker after my hypothalamus fix night session, and even getting sleepy before 11:00pm or midnight. These amazing changes that I’m still adjusting to could be because of the blanket and/or my PZ brain biofeedback protocol that I’ve talked about before.
It wasn’t just my subjective feeling that showed improved sleep, but also the sleep app I’ve been using for years. I don’t know how sleep apps determine “sleep quality,” but however they do it, it immediately shot up. It took awhile though for it to create a measurable improvement in my sleep. That improvement has remained consistent or risen slightly. Although, one may dispute how apps measure “sleep quality,” it is a consistent method, so I think the measure of improvement is valid.
Once I got used to the weight, I was like other reviewers and actually found it comforting. As summer heat approached, I began to worry about what I’d do . . . maybe use it on the couch like some do during daytime rests or naps. Instead, when temps soared and I began to burn, my body and brain pulled the weighted blanket up to about my shoulders, letting my feet stick out under a sheet. During the night instead of shoving the thing off me to cool down, it crept up closer to my neck. It seems that I’m so used to it now and that whatever it does to help me sleep, burning and mildly sweating* doesn’t deter me from using it.
Researchers are considering looking at using weighted blankets for fibromyalgia, but so far, I couldn’t find anything on how people with pain, physical injuries, or conditions like fibromyalgia tolerate it. From my own experience, perhaps less than the standard weight percentage may be tolerable and still provide some benefits. I think if I had no pain, it would be even more effective in countering the bad sleep effects of brain injury and PTSD.
As for Ballast Blankets, I found them pleasant to deal with and would recommend them. (I received the same discount offered to all early buyers.)
*I’ve written before about my injured brain’s inability to regulate my temps and to sweat, and I wrote in Concussion Is Brain Injury the possible neurological reasons why. I am still not normal apparently: sometimes I sweat and can cool down; sometimes I just burn.
The weather gods jumped our temps from jacket cool to sweaty tank tops. Pretty soon, we’ll be seeing caterpillars munching on flower buds and leaves as this two-headed monster was on a milkweed flower last year.
Brain injury and PTSD are like a two-headed monster sitting on your psyche, slowly munching on your sanity. When one head gets fed alternative fuels to calm it down, the other chews harder on your brains. There are days when there seems to be no solution.
I think I’m supposed to give you hope at this point, talk about how a kind psychiatrist can soothe one head while the other gets calmed and then switch to the other head while the one they was soothing is fed. Or talk about how psychologists advanced in treating brain injury with 21st century technologies can calm both heads at once. Or maybe talk about how inspirational quotes make the heads feel great. Or perhaps talk inspiringly about endurance and grit as psychologists keep feeding and psychiatrists keep soothing the monster.
I have nothing. I’m tired. An old friend reminded me I hit these plateaus. True. I’m still tired though. I think I just need kind listening and supporting as the two-headed monster grows a third head called grief and all three masticate my brain.
There’s a huge irony in my reading rehab journey: I thought long and hard about what it would take to restore reading after brain injury; I wrote about my theoretical program; I’ve done bits and pieces of that program; I am now receiving the bare minimum of help for reading.
My second and third posts on Psychology Todayare about reading loss and restoration after brain injury because it’s the single biggest loss I’ve had of my core identity, because it’s been so very hard to get anyone seriously interested in helping me, and because both experiences are common in others, no matter their gender or race or cause of brain injury.
I wrote in my third post about lack of cognitive empathy for my reading loss. It’s not that people aren’t sympathetic or health care professionals haven’t tried some of this, some of that, it’s that they haven’t been able to put themselves in my shoes and gone, “ohhhh, this is bad, real bad, we really must make reading restoration central to your health care.”
My neurodoc verrryyy gradually over the last three years made a concerted effort to read with me most days out of the week, following a formula that worked — after six years of me begging him — yet still only when he recalled bits of the evolving formula, when he didn’t shunt it aside for “real therapy,” when he wasn’t welded to staying in his box of 20th century psychiatric medicine and trying to shove me again and again into a gendered 20th century DSM model of brain injury. He never really had cognitive empathy for my reading loss even though he’d agreed that, no matter what, he would find at least five minutes to get reading in and, when he’d followed that, he noticed himself that I did substantially better, emotionally and cognitively. Yet because he didn’t have cognitive empathy for my reading loss, he stopped doing that by 2018. He also never discussed with the rest of my health care team how to work together to recover my reading. And he was pretty blunt in early April that he wasn’t interested in helping me with my brain injury grief, which would include dealing with reading loss. I finally decided the emotional toll of having to continually remind and beg to stick to the reading rehab routine that worked and of his 20th century psychiatric thinking wasn’t worth it anymore. Unfortunately, this kind of approach to brain injury rooted in the last century is still the norm today within medical circles.
So I’m moving on. I put him on hiatus and am putting reading in the past where others have decreed through their actions it belongs. It’s really difficult for me to enforce my own reading rehab on myself; it’s one of the few cognitions that can’t be restored on one’s own. My mother reads with me every so often. That’ll have to be enough to maintain my current level unless God decides to answer prayer and bring me a miracle.
The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.
Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”
I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.
Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”
I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?
She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”
I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.
Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…
“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.
“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”
It’s a gusty day, clouds billowing up on each other, stretching apart to reveal dark patches of blue sky and let the sunlight through. Once again this week, I’m standing on the sidewalk, against the wind, staring down down down the street, all the way to the third traffic light in the distance. Red red red green. Or is that the fourth traffic light I can see to?
How is this happening? Seeing more depthlike depth in distance objects was weird. And wonderful. Seeing the whole of a computer display in one go was oh so nice. But now with another new improvement, I’m boggling. How is this possible?
My brain is adapting. A bit unsteady at sudden moments. Back to staring and taking in buildings, people, signs, colour nuances on the Royal York hotel stones, details in bricks, Union Station’s warmth and richness of colour, before I can feel my brain release and I can continue to walk.
Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?
My depth perception is still being integrated. I’ve discovered that reciting to myself over and over “integrate” as I step down each step actually integrates my proprioception (sensory information from my feet) and perception (sensory information from my eyes) and makes stepping down and knowing where I am on the staircase much much easier. Huh. This week I got to the landing and knew it without having to stop and check my feet and feel unsteady until I did. W00t!
I’m slowly adapting to the new streetcars. Because of the TTC’s systemic bias, they have created door jambs that have yellow paint not at the outside edge but behind the black bumper. Only the accessible door has no black bumper; still, the slope down and gradual grey edge makes it difficult for my brain to perceive what is streetcar and what is pavement. And for some reason, it’s also more difficult to discern how high the step is when getting on. The old streetcars with their white-painted edges are easier to step up into, though it’s still more challenging than regular stairs . . . maybe because they’re steep??
Anyway, I bang my cane down on the surface I want to step on to, and that tells my brain where my foot goes.
The large windows and sloping floor (why oh why did the streetcar designers think sloping floors are safe on a moving vehicle‽) can induce nausea in anyone, I’ve learnt. I suggested to a friend with a perfectly healthy brain that she sit in the accessible car where the floor is flat. Nausea solved for her. But for me, it’s the large moving landscape visible outside the enormous windows. I’m assuming this moving-scenery-induced nausea/dizzy will ease over time, and I’m seated anyway, so I won’t fall.
I was starting to get quite stressed over the thought that my new vision would reverse and my brain would revert to “default.” I’m heartened that the brain biofeedback, and perhaps the increased light levels on my audiovisual entrainment device to stimulate the retina, are enforcing the new vision.